Solving the mystery of celiac disease

Early diagnosis and careful diet can reduce symptoms

Five-year-old Alex McCallum recently found out she's a celiac. It's a club she didn't want to join. None of the one in 133 North Americans who qualifies for membership has a choice. And the club just keeps getting bigger.

U.S. researchers at the Mayo Clinic in Rochester, Minn., (mayoclinic.com) say celiac disease today is four times more common than it was 50 years ago. They also found that celiacs who didn't know they have the auto-immune disease were four times more likely to die during the 45 years the subjects were followed, than people who were celiac-free.

Five-year-old Alex McCallum recently found out she's a celiac. It's a club she didn't want to join. None of the one in 133 North Americans who qualifies for membership has a choice. And the club just keeps getting bigger.

U.S. researchers at the Mayo Clinic in Rochester, Minn., (mayoclinic.com) say celiac disease today is four times more common than it was 50 years ago. They also found that celiacs who didn't know they have the auto-immune disease were four times more likely to die during the 45 years the subjects were followed, than people who were celiac-free.

No one knows for sure why more people are being diagnosed with celiac disease, says Jessica Sawyer-Bennett, a pediatric GI (gastrointestinal) dietitian at Edmonton's Stollery Children's Hospital.

"There's a genetic component, but there's also something in the environment that triggers it," she says. "It could be similar to IBD (inflammatory bowel disease), where maybe the micro-organisms in our bodies have changed. Or maybe wheat and gluten are in too many things, and that's triggering it."

By the end of June, Sawyer-Bennett will have advised almost 40 newly diagnosed kids with celiac disease and their families about how to live with it. There were 60 new cases last year.

People who have celiac disease can't digest and absorb the protein gliadin (a component of gluten), found in wheat, rye, barley and oats. When they eat gluten, their immune system responds by damaging villi, fingerlike projections that increase the surface area of the small intestine, interfering with the absorption of nutrients from food.

Symptoms can include diarrhea, anemia, headaches, chronic stomach aches, vomiting, weight loss or fatigue. But some people have no symptoms at all.

Celiac disease used to be diagnosed in kids who hadn't grown well or were really thin, but it is being diagnosed earlier these days, before they start wasting away, Sawyer-Bennett says.

Five-year-old Jessy Hauger of Leduc, Alta., tested positive for celiac disease last year, after being diagnosed with Type 1 diabetes. Because of the hereditary component, the rest of the family was also tested, and Jessy's eight-year-old sister, Rylee, and father, Travis, were diagnosed as celiacs, too. (The risk for celiac disease jumps to one in 22 if a parent or grandparent has it.)

Travis, who had had stomach problems since he was a teenager, was almost happy when he found out, he says, because it meant Jessy didn't have to go through it alone.

Jessy's mom, Mandy, banned all gluten from the house until just recently.

"We all ate gluten-free (except Easton, now 2) and I felt really good," Mandy says. "I think I lost weight. I felt less heavy, my skin was better, you just feel lighter and cleaner."

Hollywood celebrities such as Jennifer Aniston and Reese Witherspoon aren't celiacs either, but have followed the gluten-free diet to control their weight and for health. It's not good for children who are still growing and developing, because gluten-free products are lower in B vitamins and fibre and usually higher in fat and sugar. Even adults should supplement a gluten-free diet.

There is no cure for celiac disease. The only treatment is following a gluten-free diet. People unfamiliar with the disease think it means you just can't eat any bread or baked goods, but it's not that simple, says Kendall Taft, a registered dietitian who advises adult celiacs.

They also have to learn about and avoid the derivatives of all the grains found in such foods as hotdogs, soya sauce and chocolate, and in non-food sources such as makeup and toothpaste.

Then there's cross-contamination. A celiac sharing a margarine dish with someone eating gluten bread, for example, can develop symptoms after eating only one crumb of bread containing gluten, Taft says. Cross-contamination can also happen in a food plant if equipment used to make bread with gluten is then also used to make gluten-free bread.

Some people mistakenly think that celiac disease isn't serious - that you just get a bad stomach ache - unlike a peanut allergy, where a person can die after eating a peanut. But the long-term effects, if left untreated, can be serious, Taft says.

Young women who are celiac can become infertile if they continue to consume gluten; untreated celiacs are at risk for depression and osteoporosis, are unable to concentrate properly, can suffer from malnutrition, and can develop a rare type of cancer known as T-cell lymphoma.

Ironically, it was while listening to one of her first celiac clients describe her own symptoms four years ago when Taft started thinking she herself had the disease.

"My symptoms are not as pronounced, but they were similar and I just thought, 'My goodness, I must have celiac disease,' " Taft says. A blood test confirmed it: "I had raging celiac disease." Finally, she had an explanation for the profound fatigue, problems with concentration, and anemia, that had been bothering her for 10 years, but no doctor could help her with.

A growing awareness of celiac disease means family physicians are more likely to think about testing patients for it these days.

Restaurants and food manufacturers are also responding by offering gluten-free items.

But because of the risk of cross-contamination, it's still very difficult for celiacs to eat out and not consume gluten, Taft says.

So difficult, in fact, that Jay Bigam, a celiac for 14 years and a food blogger, (sometimesacritic.wordpress.com) says he became emotional recently when he ate his first restaurant gluten-free pizza in 10 years at an Edmonton Boston Pizza.

Bigam is executive vice-president of his family's company, Kinnikinnick Foods (kinnikinnick.com), which makes gluten-free products, and supplies the crusts to BP.

"My wife says I was yapping with excitement like a kid for at least an hour after," he said in an e-mail.

"It's always an occasion to be able to order from a gluten-free menu, and we frequent places that cater to my diet, but pizza is something that has been pretty much unavailable in Edmonton.

Alex McCallum, who is still adjusting to life as a celiac, has had a few meltdowns after not being able to eat the bread and pizza other family members are eating, "because she's five, right?" says her mom, Tammy.

The family is adjusting to Alex's new diet, tapping into all the gluten-free food available to her.

"It's not as overwhelming as I thought it would be," McCallum says. "You just have to change what you're eating. It's not cancer. So we're happy about that."

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The Migraine Doctor

August 31, 2010 - 16:16

I personally have seen a few patients with celiac disease that also suffer from migraines. What kind of correlation is there between the two and would it help in the treatment of migraines? http://www.themigrainedoctor.com